Objective The Educational Needs Assessment Tool (ENAT) was developed in the United Kingdom (UK) to systematically assess the educational needs of patients with rheumatic diseases. The aim of the present study was to describe the educational needs of Dutch patients with systemic lupus erythematosus (SLE) by means of a Dutch version of the ENAT (D-ENAT). Methods The D-ENAT was sent to a random sample of 244 SLE patients registered at the outpatient clinic of a university hospital. D-ENAT consists of 39 items in seven domains. The D-ENAT domain scores range from 0–16 to 0–28 (higher scoring equals higher educational needs) depending of the number of items in the domain. A total D-ENAT score (0–156) is calculated by summing all 39 items. In addition, age, disease duration, gender, educational level, present information need (yes/no) and the extent of information need (1–4: nothing–everything) were recorded. Univariate regression analysis was used to examine the D-ENAT’s potential determinants. Results The response rate was 122 out of 244 (50%). The mean (% of maximum score) educational needs scores were 56% for ‘D-ENAT total score’, 62% for ‘Self-help measures’, 60% for ‘Disease process’, 58% for ‘Feelings’, 56% for ‘Treatments’, 50% for ‘Movement’, 49% for ‘Support systems’ and 46% for ‘Managing pain’. Being female was significantly associated with higher scoring on the D-ENAT total score (β 23.0; 95% CI 5.9, 40.3). Conclusion SLE patients demonstrated substantial educational needs, especially in the domains: ‘Self-help measures’, ‘Disease process’ and ‘Feelings’. The validity and practical applicability of the D-ENAT to make an inventory of SLE patients’ educational needs requires further investigation.
Self-help Support Groups: Choices in Participation Among Women Facing Systemic Lupus Erythematosus (SLE)
